An account of my journey coming off 30 years of topical steroid use for eczema. My journey began on February 14th, 2013. Below are the three reasons I fought so hard to find an easier way through this!

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Monday, May 16, 2016

Updates and 200th post!

This is my 200th post for this blog. Pretty crazy! But lately I have been hearing from people who have silently followed my blog and found some relief from their flaring. They have expressed gratitude and this makes me very happy that I started this blog in the first place. Initially I didn't want to show my pictures to the world. It was a horrific time and the pain of looking at myself in the pictures was too much at times. But our stories must be told. It is necessary to spread the word and get awareness out there so others can stop suffering with the ongoing need for more and more steroids only to have their skin get worse. So thank you to all who have been emailing me and sharing your stories with me!As for updates.....well things are looking really good as of late. I have shared with you for the last year how I have had regular eczema - dry itchy patches here and there from my diet. It typically gets worse with dairy and gluten and I've found it hard to keep them out of my diet for various reasons - mostly just being busy. I still follow a very natural, organic diet. I still get raw milk every week and make my own butter, kefir, and yogurt. I typically will have butter but only a small amount of cream in my coffee. I've really tried giving the coffee and cream up, but it's so good and I find it relaxes me - especially my evening cup of vanilla flavored decaf coffee. So instead of trying to constantly restrict my diet (which let's admit is NO FUN! nor easy), I have instead been focused on healing my gut. I have been taking probiotics for years and consume probiotic rich foods. But the last few years I have been dealing with worsening hives and asthma symptoms as well as the eczema. I did quite a lot of research and talked with an ND and it appears I have histamine intolerance. Some support groups and articles say histamine intolerance is something chronic and will never go away. Well, I don't believe that, just like I didn't believe we had to suffer for years with TSW. I believe our bodies have an inherit ability to heal themselves given the right environment and the right tools. But let's face it, how do we know how to help our bodies heal if we don't know the root cause? Steroid creams are not the root cause of RSS and subsequent TSW when stopping them. Too many people use steroid creams intermittently with no problems. So there is something wrong within us that does not allow our bodies to process the steroid creams appropriately. The genetics thing I covered in my last post. Today I want to talk about the other piece to this puzzle - our diet - or more to the point - the health of our guts. Hippocrates was a smart man - his whole practice was based on the concept that all disease begins in the gut. And I believe he's 100% right! I have now switched to trying to give my body the tools it needs to heal without restricting my diet to the point of insanity. I stay away from store bought gluten products. From time to time I make my own bread with einkorn flour which is an ancient wheat with significantly less gluten than today's flour. I also do not consume any dairy products outside my raw milk supply. I don't eat sugary foods or processed foods for that matter. I have tried the low histamine foods and the intermittent fasting which does seem to help but is only a crutch, not an answer. I believe my body should be able to process whatever histamine I throw its way once it is fully healed. So I began an extensive research on leaky gut "cures". I'm a certified GAPS diet practitioner and I am well aware of how GAPS helps to heal the gut - but the main staple that needs to be consumed at every meal is bone broth - which is high histamine. Hmmmm....kind of defeats the purpose! All the inflammation brought on by the high histamine will just impede my ability to heal. So what to do.....I found a GREAT article - and I mean this is super comprehensive and literally encompasses the entirety of how to heal our guts without going through hell to get there. It is actually very similar to the GAPS diet but is doable to do in a month or 2 time whereas GAPS is almost a year long commitment. Here it is: http://goodbyeleakygut.com/heal-leaky-gut-syndrome/Now, with that said, let me explain what I am currently doing out of that article and how it has been helping me....let me just say I'm not doing much and it's still helping significantly! So I haven't given up gluten yet. I still love over easy farm fresh eggs with toast that I can dip in the warm yolks - YUM! That's a big thing for me to give up and I'm just not there yet. But, I have started increasing my L-glutamine. I was taking 1500 mg a day with food and other supplements. Now I wake up and take it on an empty stomach and another dose in the evening before dinner. Currently I am up to 8000 mg per day divided into 2 doses. I buy the 1000 mg capsules by NOW on Amazon. I have continued with my bovine colostrum which I saw improvements with my asthma but not enough to get it fully under control. I am also back to my Great Lakes gelatin (green container) and take 4 tablespoons divided into 2 doses daily. I do this instead of making my own broth. I plan to increase to 6 tbsp a day this week. And well, that's it. I still of course take a few other supplements to help with inflammation (for my asthma and gut) like MSM powder, quercetin, co-q 10, fermented cod liver oil, and immune modulators. I believe it is this multi tool approach that is helping me to finally see huge improvements. To note, I have only been on this regimen for the last 7 days and already my dry patches are almost completely gone and my asthma has not bothered me in 3 days. Up to then I was taking 2-3 treatments per day of my inhalers or rescue med. I am on no other meds for anything. I have had to take benadryl here and there for hives but that stopped about 3 days ago as well. No hives, no major itching after eating (with an exception here or there to the itching). I will keep at this approach and will continue to titrate my L-glutamine up to 10,000 mg per day as per the maintenance dose. I may or may not do the higher dosing for a few days or the bone broth fast. I think I will continue on this path and see how thing progress. If I find I'm still having histamine problems or asthma gets worse, then I will incorporate some more strict limits on my diet for a bit to see what happens. Right now, I am fully enjoying life! I walk my dogs daily, have fun with my kids home schooling them, go to parks, and still learning new things - like lately I've been into learning about how to dehydrate my own food for long term storage. My husband is still in NY for work and will be coming home for good in June! We are still in the process of closing on our house in NY and when that is finally done, we can start the building process on our 68 acres! This year we are going to plant some fruit trees, and put netting on the hundred or so wild blackberry bushes we have on our property. Last year we went to pick some but the deer and birds got most of them, so a few dollars in nets and we should have a HUGE harvest of blackberries this year! Very excited! Otherwise, life is and has been back to some semblance of normalcy for me. I no longer fear a flare as it has been way too long since my skin bothered me. My minor finger flare this past winter was I believe the dying out of my TSW....it was on my pinky finger and it made me think that it was taking the final dive to being done. The hives and asthma has been remarkably better for the last few months since starting the colostrum and is now even better since my latest additional supplements. I don't think about my skin at all - it has no bearing on any decisions for me. It doesn't matter if it's hot or cold out. It doesn't matter if I take a shower or a bath. If you are still in the thick of things, know this....you too will heal and it will be glorious! Here are a few pics of my skin from this morning:

This is me sitting down after going for a walk this morning with the dogs. Ever so slightly splotchy on the face, but it was 40 something degrees outside.

My dry eczema - got a little itchy after walking

These 2 pictures were taken last month as part of my weight loss competition. They're slightly blurry due to one of my children taking the pictures, but it is evident that my skin is quite clear and I'm continuing to do well.

My Way Of Healing

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About This Blog

This blog is a written record of my journey through topical steroid withdrawal (TSW). Topical steroid addiction is real. I have been using topical steroids for the past 30 years. I first learned of TSW on 2/14/13, and immediately threw away all my creams that contained topical steroids. That is the day my journey into withdrawal began. I am here to listen, to give an account of what I am going through, to help others in their journey, and to give hope. Please message me for any questions, concerns, or if you just need someone to listen. Please feel free to leave comments about your experience - what works for you and what does not.

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Regarding Blog List

My blog list has many TSW bloggers - it is in order of recent updates. Please look at the older ones as well - many of the blogs towards the bottom are those of people who are healed from TSW so their blogs are just as important and full of information! If you do not see your blog here and you are suffering with TSW, please comment on my most recent post so I can add you to my list!